People sometimes ask me how they can help in our journey with PANDAS. Please read this and take a few minutes to write your representatives on behalf of children who desperately need medical care for these autoimmune conditions. Thank you!

Do you have a child or know a family who has been impacted by PANS: PANDAS-PITAND?

I encourage everyone to contact their state representatives in support of similar legislation! This will only take a few minutes of your time and will do so much to help a child whose life has been turned upside down.

See this link: http://www.usa.gov/Contact/Elected.shtml to contact your representatives! It’s imperative to share with them the devastating impact this has on children and their families and the urgent need for additional research, as well as ICD listing and insurance coverage!

Please, be clear that high dosage IVIG *has* been shown to be helpful for these autoimmune conditions and should be covered by insurance for all PANDAS-PITAND (PANS) children. Each treatment costs $ 10,000 – $ 12,000 and many children (such as Faith) require ongoing infusions. Often, they are not covered by insurance.

Also, direct them to our website: PANDAS-PITAND Awareness & Research Supportfor additional information. Review the list of symptoms on our home page. Imagine your previously normal child suddenly becoming gripped by most, if not all of these symptoms at extreme levels of intensity. These children know there is something very wrong with their brains… they live with sudden onset

phobias,

obsessions,

contamination fears,

anxieties,

separation fears,

school refusal (yes, even children who loved school and were in gifted classes),

emotional lability, including rages (even in children who previously did not have temper tantrums)

ADHD

Major Depression

Relentless unwanted “bad thoughts” (this can range from thoughts of harming others to thoughts of suicide)

compulsions

memory loss

inability to trust your own brain and body that are suddenly turning on you in dramatic ways

The lives of your family change, literally overnight and are never the same… unless you can get this monstrous auto-immune disease into remission.

I co-admin a group of hundreds of PANS: PANDAS-PITAND parents, that grows daily. These families are in crisis, desperate to find help for their seriously ill child(ren). There are only a handful of physicians in this country who are currently experienced in treating these conditions. If you have any questions about these conditions, please message me through this blog or our website: PANDAS-PITAND Awareness & Research Support Contact page

Our children can’t wait. They need help NOW! Thank you for helping a child… please share this post.